Policy Committee Meeting

Approval of previous meeting minutes

Action: Kerry Hanson made a motion to approve meeting minutes from January 16, 2024, seconded by Rae Blaylark. All in favor. Roll call vote 4/5.  One absent.

Old Business

Texas RDAC Letter Update

Director Barnes spoke to the how and if we engage with Texas Medicaid.  A letter was written to the legislators that were working on the Texas RDAC regarding rare diseases crossing state lines.  The letter was received warmly and developing RDAC’s are learning how to work with each other.

Advocacy Day Updates

We are excited that we have 6 lead patient advocacy groups and 4 attending patient advocacy groups in attendance.  The Sickle cell Foundation has secured advertising space on KMOJ.  We are doing an open house style room with attendees meeting with legislators throughout the day.  There is a group meeting weekly to ensure that the day goes as smoothly as possible.

New Business

Our main bill addresses our funding and obtaining the Council’s full funding.  This will increase our operating budget.  The bill will also allow the council to do taskforces related to gene therapy.  The bill will also allow the council to add ad hoc membership with a vote from the Council rather than a Governor Appointment.

Deliberation on bills that RDAC will potentially support:

1. Prior Authorization and coverage of health care services HF 3578 as introduced – 93rd Legislature (2023 – 2024) (mn.gov)
   This bill is removing obstacles, specifically for chronic disease and yearly requirements.  It was discussed as to RDAC writing a letter of recommendation, or to continue to identify members to testify.  A discussion was had regarding the denial process.  Are the appeals after denial encompassed in this bill?  There may be areas that RDAC would like to call out as it does not go nearly as far as the federal bill.  RDAC agrees that there is more to be done in this area.  What data is required reporting?  The reason for denial?  What is most meaningful for RDAC to see represented.   Director Barnes noted that the legislative session is moving fast and that she hesitates to put too much into the letter, as it will not be amended, in time.Recommendation:  RDAC write a letter in support of this bill.
   Kerry Hansen motion made a motion that the Council send a letter of support for this bill, seconded by Karl Nelson – 5/5. Passed.
2. Health carriers required to provide coverage for rapid whole genome sequencing. HF 3330 Status in the House for the 93rd Legislature (2023 – 2024) (mn.gov)A discussion was had regarding this bill. The language has been circulated with hospitals and the preliminary reporting language will be removed.  Negative results are just as meaningful to the rare disease community with exclusive testing.  Results are a factor in coverage.  Highlight that all results are important.Recommendation:  RDAC write a letter supporting this bill and continue to provide testifiers when asked.
   Kerry Nelson made a motion that the RDAC provide a letter of support for this bill and that we provide testifiers, seconded by Karl Nelson.  All in favor 5/5. Passed.
3. Medical Debt Reform including the co-pay accumulation ban: Not yet Introduced:  Press Conference LIVE | MN Gov. Tim Walz to preview medical debt solution proposals (youtube.com)AG’s office reached out to RDAC look for testimony.  A co-pay accumulator was added to this bill.  Coupons are provided by the pharmaceutical companies that the payor will take, and it does not benefit the patient at all.  The system is basically taking benefits from the patients.A discussion was had regarding this bill and that RDAC can support the addition of the co-pay accumulator ban and we can continue to identify testifiers.  The bill has not been seen in its totality.  Will we have an opportunity to have another meeting to have more information regarding this bill.  We have time before we decide on a letter of support.  We will continue to provide technical assistance within our communities.  It was asked that in order to not alienate other PAG’s that want to support this bill, we will need to make the information available.  We can use a policy alert in Gov Delivery.
   Recommendation:  To wait on the support letter and to continue with technical support.
   Dawn Stenstrom made a motion to provide technical assistance and make testifiers available to the AG, seconded by Kerry Hansen. 4 /5 Please advise. Passed.
4. Unbundle Gene Therapy from GRG: Not yet introducedSustainable pathways for gene therapy and they cannot unbundle from the DRG.  Net new kind of treatment and the system is not designed to pay for therapies this expensive.  Outcomes based arrangement.  CMS is launching a pilot to help states work with labs – they need legislation to do this:
   Recommendation:  support this bill as it will be groundbreaking in refining this bill and making these therapies available to the rare communities.  Costly and complex.Kerry Hanson made a motion to support the unbundling of gene therapy from the DRG, seconded by Rae Blaylark, 4/5 Passed.

Public Comment

None

Adjourn Meeting

Motion called to adjourn by Rae Blaylark at 5:02 pm, seconded by Karl Nelsen.  Roll call vote 4/5